Health Coverage and Me

I was born a pre-existing condition. Though the name for my condition was unknown until 2007, it was in existence and creating problems as early as my birth. Multiple Hamaratoma Syndrome aka Cowden Syndrome is a condition caused by a mutation in the PTEN gene. The PTEN gene produces a protein responsible for cellular death. Because mine is shorter than the norm, it does not produce an adequate amount of that protein. For this reason, my cells have faulty brakes. Tiny benign tumors cover many of my bodily organs. The benign tumors are not the biggest problem. Due to the fact that so many benign tumors exist, my odds of cancerous ones are much higher than the general population. By the time I was 30 years old, I had what was treated as three different cancer diagnoses.

COBRA was brand new when I was diagnosed with dysgerminoma at age 9 in 1986. COBRA would have allowed my father to keep health insurance on me following his being laid off from work. It can be debated for days whether he did the right thing in not doing everything to purchase COBRA. My father's mind was on helping his little girl recover from cancer-not on the financial aspect behind it. I became a patient at St. Jude Children's Research Hospital one week after my initial diagnosis. St. Jude hospital does not refuse treatment based on the inability to pay. The hospital recognizes that focus on financial problems behind cancer takes away focus from healing and recovery. St. Jude hospital also recognizes children cannot be held responsible for their parents' decisions. When the decisions of a parent continue to affect the child as an adult, it is unfortunate. I sit in that position.

Looking at the long haul in 1986, insurance companies could not discriminate against me based on pre-existing factors once the cancer was absent ten years. My cancer was staged 1A. My parents had no reason to believe cancer would be a part of my life once the ten year mark-October 7, 1996 arrived. Neither my parents nor the doctors believed it when the dysgerminoma came back on November 1, 1992 changing my release date from 1996 to 2002.

The problem was I have Multiple Hamaratoma Syndrome and we did not realize it. Benign tumors have to be differentiated from malignant ones and that means surgery. Cancer scares were a regular part of my life in the 1990's and remain so to this day.

My husband and I married in 2002. I wanted a child and my personal health care took second place until our son was born in late 2003. I went for normal checkups for ten months until learning our daughter was on the way in late 2004. The month we learned our daughter was due in the summer of 2005, I found an operating report for my previous operation. The last half of my thyroid gland was removed in 2002 and someone wrote a notation to check me for a condition known as Cowden Syndrome (Multiple Hamaratoma Syndrome).

By this time, the Internet was in full force so I hit the world- wide -web and learned the defining characteristics of Cowden Syndrome. Terror struck me as the condition was known to be genetic and dominant-meaning my children had 50-50 odds of going through similar problems.

Some may think the hospital should have tested me for this condition-especially after it came back in an operating room report but there was no sign of it in my family. At the time of this writing, it appears likely the mutation was spontaneous and began with me. If I had been tested in 2002, the only situation that would have changed would be my questioning having children. Because this condition likely began with me, I believed it could not be a genetic problem. Terror struck me in realizing it is a genetic and dominant problem.

I knew Multiple Hamaratoma Syndrome was the underlying cause of the cancer scares as soon as I looked it up on the Internet. I tested positive for the condition in 2007. Less than one year after the confirmation, a mastectomy to prevent breast cancer showed we were actually treating cancer. Pathology found Ductal Carcinoma in Situ at grades 1-3 (mostly 2) throughout 60 percent of one breast and 70 percent of the other. The cancer was hiding on mammogram and ultrasound. It took the process of opening me up and removing the tissue to diagnose cancer.

As I sit writing this, I am missing my thyroid gland, uterus, tonsils and adenoids, and appendix due to benign tumors. I am missing an ovary, a kidney, and breasts due to two different types and three different cases of cancer. The genetic tests to determine if my children have Multiple Hamaratoma children were done six weeks ago. After I post this article, I will call and without question learn if they will face similar problems to what I have faced in regard to remaining healthy.

The new healthcare law is giving me strength. I am one of the Americans with a pre-existent condition who will have to wait at least four years before attaining insurance is possible for me. I think of my children above myself. Because of this bill being passed, if my children have Multiple Hamaratoma Syndrome their dreams will not have to change due to something they cannot control. There is so much guilt and pain in realizing they may have this due to me but there is a relief in knowing the problems I have in attaining health care may not be an issue for them.

My children are intelligent and have much to offer the world. My son recently turned six years old and wishes to become a scientist. If this bill is genuine, he may not have to give up his dream if he has Multiple Hamaratoma Syndrome and must be screened for cancer. My dream was to be a Senate intern in 1999. I was told I had the job if I could find a way to get to Washington, D.C. Because of recurrent health problems, cancer scares, and being in remission less than ten years at the time, I never found my way to that dream.

As long as my children have their dreams, I will not look backward at my own misfortune.

How would the new health care laws affect me? I am unsure the laws would affect me directly. I am certain it will be at a minimum four years before this question is answered. Supposedly my preexistent status would evaporate but I am a skeptic. If this status was to be removed and we could purchase insurance on me, without question we would see more of our income in our home rather than on my medical conditions.

If everything stays as it is currently, I sit in acceptance of my condition. Twenty four surgeries and many colonoscopy type invasive procedures have created a long road to acceptance. The problem of not having health care held me back. Knowing my children may have similar problems, held me further back. Realizing if they do have Multiple Hamaratoma Syndrome and can be screened for cancer if they do, further solidifies my acceptance. If I can gain access to affordable health coverage, it is, at this point, unfathomable. Thinking about living long enough to meet my grandchildren brings tears to my eyes.

The laws are by no means perfect. I have made attempts to understand how people can see medical coverage for others as a bad idea. My attempts have shown me they fear their coverage will be worse. Some do not want to have to pay for something they do not believe they need. For the second group of people, they are living a life I cannot identify with-believing medical problems will not happen to them so they do not need the coverage. I have sympathy with the first group who fear their coverage may be affected. My coverage was affected at the age of nine. My coverage was deeply affected at the age of twenty-five when St. Jude hospital released me to alumni status never to return. I know fear more than any human emotion. Fear inhibits progress. Fear slows down the acceptance process. Fear is the most difficult emotion to control.

Fear of not having adequate medical coverage is a fear everyone has regardless of circumstance. People who have preexistent conditions are on the same side as those who fear losing their coverage. Change is frightening but necessary for growth. People should be together in the fight to save lives.